February 2009 Archives

I have been offline for a few days because, well I have been offline. On Monday, I came down with what turned into one of the worst GI bugs I have ever experienced- bad enough to land me in the hospital for a day to get IV fluids and meds.

I am just starting to crawl up from the muck now. I feel like I have been on the losing side of fight. I look like it too.

In the midst of all of this, of course I had to deal with insurance issues. When will the national nightmare of our health care system be dealt with in a sane and rational manner?

Cleary, I am not all the way back yet, so I will keep this short. Health care is a right.

There have been some comments related to my, “Advice to a Friend” post I want to address. The comments have been on the idea that we are overdosed on HIV drugs, or that we need more study of alternate dosing.

I fully understand why people think this way. With very few exceptions HIV drugs are dosed in a, ‘one size fits all,’ fashion. When I was a Treatment Advocate at AIDS Project of the East Bay, I had a treatment education group. During one of my first sessions, I asked everyone to share what they were taking (if they were willing). Sitting right next to each other were two clients- one a man of around 300 pounds and a woman who maybe weighed 100 pounds, who were taking the same doses of the same pills- this stuck me as crazy.

The research however hasn’t been so clear-cut. One of the major issues, is that almost all HIV drugs work inside cells, so measuring drug concentrations is either very difficult or not very useful, or both.
The big issue here is the fear of side effects. Now at the risk of pissing some people off, I assert that most people, maybe virtually all people who are living with HIV, or are in some way strongly connected to HIV over estimate the frequency and severity of HIV drug caused side effects. That isn’t to say side effects aren’t real- it just means they aren’t as common or as severe as you probably think they are.

The only reason I have ever changed HIV drug regimes is due to side effects. So, I know they are real and what kind of impact they can have on people.

Why? Because you notice when people have side effects. People talk about having side effects. People don’t notice when people aren’t having side effects. People rarely talk about not having side effects. This leads to a perceptional bias, which overstates the problem of side effects.

One of the stories coming out of this year’s Conference on Retroviruses and Opportunistic Infections (CROI), is the long awaited results from SILCAT and ESPRIT- the two large, long term studies of the immune based therapy IL-2. The basic findings were that, while IL-2 predictably increased CD4 counts, it did not improve outcomes.

IL-2 was long seen as the best chance for an immune based therapy for HIV. It has long been known to increase CD4 counts, but questions remained about whether those CD4s would translate to better health outcomes.

These studies fairly clearly show no real benefit to taking IL-2. People taking IL-2 had higher CD4 counts, but no significant differences were seen in rates of illness or death.

So, is IL-2 dead? Probably. The company that own IL-2- or Proleukin, Novartis, has been indicating for some time that they were very unlikely to file with the FDA for an HIV indication, even if the results were favorable. Now that they aren’t, it will make their decision easier.

I still think there might be a role for IL-2 in HIV, or maybe roles. First, I think it might be useful for people able to control HIV replication, but who do not experience good increases in CD4 count. There have also been some intriguing studies of IL-2 as part of early treatment and treatment interruptions.

Chances are that little new research will be done- at least not of the type needed to really understand the potential of this drug.

More importantly, this is yet another body-blow to the prospects for immune based therapies in HIV. It is really difficult to get pharmaceutical companies interested in these interventions, and now I fear it will be next to impossible.

The news broke yesterday that Robbie Alomar, former All-Star baseball player is being sued by an ex girlfriend for intentionally exposing her to HIV. According to reports, Alomar declined to get tested for HIV despite showing signs of HIV disease and urging by both his doctor and his ex. Presumably they had unprotected sex during this time.

I am a baseball fanatic. Robbie Alomar was a great player in his time- going to the All Star game 12 times during his 19 year career- but prior to yesterday most people remembered him for an incident when he spit in the face of an umpire during a game. One has to wonder whether these stories will merge at some point.

Alomar is denying the allegations, while claiming both that he is healthy and that his health is a private matter. If this case goes forward- and it very well may not- his health status is unlikely to remain private.

The story is too new and filled with holes for me to have an opinion- but I will be keeping an eye on it for sure.

Thursday marks the 200th anniversary of Charles Darwin’s birth. Today’s Science section of the New York Times has several articles dedicated to aspects of old Charlie- from the logistical difficulties of compiling an exhaustive family tree of all the plants on Earth, to Darwin as man ahead of his time, to Charlie the comedian.
The most provocative article for me was one that basically called for the abandonment of the term, “Darwinism.” The argument says basically that the over association of something as important as evolution to one man in inaccurate and harmful.
Inaccurate for sure. The article, and others in the NYT section, point out that evolution was a well established theory long before Darwin, and the discovery of heredity and genetics were as crucial to science as Darwin’s main contributions: the ideas of natural selection and reproductive selection.
The larger point however is of the distinction between the norms of science and other areas of scholarship like political science. Science builds, tests, refines, and retests theories- it does not create isms, or schools of thought. By reducing evolution to the brilliant work of a single man, the real contributions of others as well as the deficiencies of that man are lost.
Fair enough; but it is harmful? I am of two minds on this. On one hand, we Atheists have very few widely recognized historic figures to celebrate. On the other hand the punk rock slogan, ‘Kill Your Idols,’ rings very true to me.
Whatever the truth, Charles Darwin should be celebrated. Here is to you Charlie, for all you have done for us.

Lux Interior, founder and singer of the Cramps has died. The Cramps changed my life. They were among the first bands that got me into punk. Their raw, aggressively simple music was a sharp counterpoint to the bloated technicality of early 80s rock. Lux was equal parts menacing, dorky and cool. Bad Music For Bad People is on my list of perfect albums.

Here is to you Lux, you gave us all a new kind of kick.

RIP Lux. RIP the Cramps.

Yesterday I went to see Bobby Seale, cofounder of the Black Panther Party, speak at Berkeley City College. Bobby is in my pantheon of heroes. The Panthers helped make AIDS activism possible by putting the notion of self directed, grass roots activism in to real world action.
One of my favorite slogans comes from the revolutionary Union, the IWW- ‘Direct Action Gets the Goods.’ That idea- that concerted action by the people most affected by any issue come results- was a guiding principle in the earlier days of AIDS activism.

Rachel Maddow called the AIDS activist movement a great hidden success story- and she is right. AIDS activism changed the world, much more so than anyone thought is would, or even could.
Many people know the Black Panthers carried guns. Some know that they ran a nation-wide free breakfast program. Even fewer know they set up a series of community based health clinics which spearheaded the largest sickle cell anemia testing program in US history. Even fewer know they ran free ambulance services in a handful of communities.
Underlying both the Panthers and ACT UP was the idea that people can and must exercise political power, through what ever means are necessary. It was necessary for the Panthers to patrol the streets of Oakland to guard against police brutality and other official misconduct. It was necessary for AIDS activist to chain themselves to the doors of drug companies, or shut down traffic on the Golden Gate bridge. These actions made it possible for us to have a choice of over 20 HIV drugs, and to have an African American President.

An old friend of mine who is living with HIV recently emailed me a story about a small study which looked at the safety of a 5 day on, 2 day off efavirenz based regimen.:
http://www.hivandhepatitis.com/2008icr/hiv9/docs/111808_a.html

He wanted to know what I thought. Here is what I wrote:

I know lots of people who do this and it is most likely pretty safe in most cases. A couple of caveats: First, the study in this article is very small, so its findings aren't that reliable. Second there is a concern that people are more likely to have sex, including unprotected sex, on weekends- which would be much riskier off meds. Lastly, I tend to think that nothing is more toxic than untreated HIV. The meds can be a drag, but HIV causes damage to many types of cells and tissues- often through promoting inflammation. This kind of thing was not looked at in this study, and really couldn't be. So, I tend to counsel against treatment interruptions, but totally understand if people choose to do them.